Wednesday, December 17, 2014

Dear Devoted 2 Jen & Patrick friends

As many of you know, a group of special friends put together a fundraising event/page to help Patrick and I get some answers and hopefully help us have a rainbow baby.

(rainbow baby meaning: a baby that comes after loss and pain, with the rainbow being the beauty after a storm)

With the funds that were raised and with an amazing genetic team battling our insurance company, we were able to get the genetic sequencing done.  If you recall, Dylan and Noah both had a unknown genetic anomaly.  The only way to potentially find this needle in a haystack, was to have genetic sequencing done.

I use a library analogy that seems to help people understand how difficult finding this "defect" was. Think of a massive downtown or University library.  Think of all the floors, the rows, and stacks after stacks of books.  Now I tell you to find the missing word.  I don't tell you the floor, the row, or the stack. I don't tell you the book or the page.  But I expect you to find it.

Now do you see how crazy difficult that task was?

I can't tell you how many people asked us, 
        "can't you test for whatever it is? There should be a test!"

Right, there should! But how do we expect doctors and modern medicine to know what an unknown is?! There ARE tests for KNOWN defects, and mutations. But that took time, money and someone having that defect.

So we knew there was a good chance that they still would not be able to pinpoint the exact problem. We sent out all the DNA samples they requested and then we waited...

                   and waited...

                                AND WAITED...

until we got the call to come in.

Now she called me and said we have the results, when can you guys come in? Those that know me well, know I am EXTREMELY IMpatient. I called Patrick and said, "ok, they have the results what time can you get here?" LOL.  He wanted to wait.

WHAT?!?! NO! We already waited months and months and we KNOW they HAVE the results! This isn't a "what is a couple of more days gonna do" type of situation here!

Patrick (thankfully) decided not to battle me on this (love you hon!) and came to meet me later that day.


So what next?

Then we met with 2 different IVF clinics to discuss what our options were. One clinic was SO AWFUL at communicating they made the decision extremely easy.

The clinic needed to talk to IVF genetic lab to see whether or not they would be able to create a probe to test for the defect.  So then we waited again, which another possible road block.

We found out a day or so after Dylan's birthday, that the lab would in fact be able to create a probe and be able to pre-test any embryos that were made for the defect the boys had.

So next up, IVF meds and pokes...and pokes...

Poking yourself in the stomach repeatedly with needles, isn't that easy lol.  I was able to do it though, because I knew what the outcome could be and that helped motivate me.

We went through the pokes, and the egg retrieval.  They were able to get a handful of mature eggs that they fertilized and then again waiting.  We needed the embryos to get to day 5 and still look great in order for them to be biopsied and tested.

3 made it to day 5.

They were biopsied and then frozen and guessed it... we WAITED.

They found out that 2 had the defect, and the one had another issue that made him/her not viable.

I cannot put into words how gut wrenching, earth shattering that news was.  It's just a constant soccer punch over and over, and at some point you feel like there's no way this could honestly be happening to us. Not after everything else.


I can't tell you why.

I can't even tell you the next step. Speaking for myself, I feel like giving up. How can I not? I'm sorry if that makes you disappointed or angry with/at me. But at some point you need to call UNCLE! Enough is enough!

Are we there?  I don't know.

We know there are other options, we don't need to have them listed to us.  We know we can try again, we don't need to be reminded.

We need to take time for us right now, and heal from this blow. Healing takes time.  I am picking my marriage and my husband right now.  I will not rush or force him to do something he isn't ready for, and he isn'y doing it to me.  To be honest, I'm not sure I can handle anything else.  Just being near or seeing anyone pregnant is like pouring gallons of salt into an open wound.

But I wanted to say a BIG thank you to all of you for helping us try. Thank you for giving us the support and the opportunity to try and have a biological baby. I have wanted to give you all an update sooner, but I just couldn't bring myself to type it all out.

And even though the outcome isn't what we all hoped for Patrick & I, you have all helped advance medicine and helped future parents have healthy babies without this mutation.  So THANK YOU <3


  1. Oh no. . So sry to hear. . Luv to u both! And whatever ur decision is at whatever time- know that love will surround you both ... -Mandii

  2. Big hugs..... Keeping my distance, but you know where to find me. I hope you guys were able to spend the holidays together as husband and wife and just enjoy each other. Sending lots of love your way. ~Demita